Exploring the role, needs and challenges of relatives of mothers with HIV or HIV and psychosis: A qualitative study

Abstract

This study explored types and nature of supports by relatives of mothers living with HIV and psychosis in comparison to mothers with HIV only. Interview data on their experiences of their roles, needs and challenges were collected from 33 relatives on mothers with HIV and psychosis (n=12, females=10, blacks =12, age ranges 21 to 62) and those with HIV only (n=21, females=16, blacks =21, age ranges 18 to 63). The data were thematically analysed utilizing Atlas.ti. The results showed that relatives in both groups provided a variety of supporting roles. Important challenges were experiencing the negative consequences of especially HIV in combination with psychosis in their lives and dealing with the caregiving responsibilities without having enough information. Important strengths included utilizing support networks and remaining hopeful. Support needs for carers of mothers living with HIV related psychosis or HIV only, can be enhanced with increasing social and material resources at the community level. Supporting needs can be addressed by empowering communities through psycho-education.

Keywords:

• HIV/Aids
• psychosis
• caregiver experience
• perceived social support
• family psycho-education

Acknowledgements

Gratitude is expressed to each participant who was willing to share their experiences as well as Ilse Vriend and Anniek Koele (VUA students) who assisted in the data collection. The financial assistance of the National Research Foundation (NRF) towards this research is hereby acknowledged. Opinions expressed and conclusions arrived at, are those of the authors and are not necessarily to be attributed to the NRF. This study forms part of the NRF-VUA Desmond Tutu Doctoral Programme which is coordinated by the South Africa-VU-Strategic Alliance (SAVUSA).